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Are Myalgic Encephalomyelitis and chronic fatigue syndrome different illnesses? (Jason)

Discussion in 'Latest ME/CFS Research' started by jimells, Aug 11, 2015.

  1. jimells

    jimells Senior Member

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    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4125561/

    Is this a new version of a 2014 study? I don't understand what the reference to different versions might mean.
     
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  2. jimells

    jimells Senior Member

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    Basically they are repeating an earlier study using better methodology.


    One group is patients referred to Julia Newton's clinic and the other group is self-identified ME patients. It seems like an interesting approach.

    So the ME criteria has much better consistentcy across disparate groups of patients than Fukuda. That seems significant to me (although I'm not qualified to judge). I'm guessing it means that studies using ICC criteria are going to be more reproducible - is that correct?

    :thumbsup:
     
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  3. alex3619

    alex3619 Senior Member

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    I don't think we know if ME is one disease. CFS is obviously a hodge podge definition, including whatever diseases lie behind ME.

    The issue for research is to focus on specific highly defined subgroups. Those with clear neurological symptoms and are fully dependent on support, for example. Such patients should produce better results.

    Otherwise this is about criteria. A well funded and designed study could use ANY criteria, because you exhaustively subgroup as part of the study. We now have evidence that even if ME is one disease it still needs subgrouping.

    The real issue is cheap and badly applied definitions, with inadequate studies. Some of this is about money. Some of this goes to bias or vested interests. Much of it goes to prejudice when trying to apply for grant money.

    A properly conducted Fukuda study, with full testing and subgrouping, would be much much more difficult and expensive than a similar one on bedbound ME patients. Yet it could be done.

    It isn't done though. The one that comes closest is the multi-site study, and even that has its limitations.

    We need to focus less on names, and more on strict study definitions and patient cohorts. The cheapest way forward is, in my opinion, the most expensive on a per patient basis, but will give better results. That would be a study into CCC or ICC ME patients who are fully bedbound and dependent on support to survive. However there are ethical issues here, they are so very sick, and logistical ones. Any testing would have to come to them, aside from possibly things like MRI in which case the patient might be sedated and transported, at even more cost.

    Chronic fatigue patients who are not particularly dysfunctional are low hanging fruit. Its the streetlight effect. They are looking in the easy place rather than looking in the place that will yield the best results. Heck, they might even find eight sets of keys, none of which are the right ones. (The streetlight is sometimes explained by an anecdote where someone was looking for their dropped car keys under a lamp post, rather than where they dropped them, because it was easier there.)

    I wonder if Julia Newton's in vitro muscle testing could be developed into a test? That would be a muscle biopsy, but many of us could probably handle that better than a 2 day CPET. I have previously commented though that repeat metabolic testing should provide similar results to the 2 day CPET, and its something I would like to see examined.

    The finding that the ICC is much more restrictive is a good thing if confounding diagnoses are properly excluded. It makes for a better research definition.

    As far as clinical definitions go, SEID is likely to be more widely utilized to better effect than most. However it also has huge potential for misdiagnosis because most doctors are unlikely to properly apply the definition. Yet that probably occurs even in ICC. Most doctors will not read the supporting material, and so may ignore the issue that exertion intolerance is defined differently to exercise intolerance. They already seem widely ill informed - there are three tests that go back to the 1940s that show severe dysfunction, yet I am betting most doctors cannot name them. Further there might be another test on the way, from 1852. That still requires more validation though.

    Jason might use the definitions accurately, but I am betting most doctors will not. So its hard to infer much about clinical practice. Its research usage that is more important. I think we need to pay attention to what he is saying with research in mind.
     
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  4. Roy S

    Roy S former DC ME/CFS lobbyist

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    Abstract
    "Considerable discussion has transpired regarding whether chronic fatigue syndrome is a distinct illness from Myalgic Encephalomyelitis."
     
    yes, agreed, you betcha, no doubt, affirmative, yup, certainly, aye, indubitably, granted, of course, exactly, amen, definitely, okay, roger, sure, unquestionably, right, undoubtably, assuredly, correct, naturally, indisputably, uh huh, yea, okeydokey, indeed, right on.
     
    From the creator of the name "chronic fatigue syndrome" Steve Strauss (deceased) at the NIH to Keiji Fukuda at the CDC two decades ago:
     
    "... I predict that fatigue itself will remain the subject of considerable interest, but the notion of a discrete form of fatiguing illness will evaporate. We would, then, be left with Chronic Fatigue that can be distinguished as Idiopathic or Secondary to an identifiable medical or psychiatric disorder. I consider this a desirable outcome. ..."
    http://forums.phoenixrising.me/index.php?threads/nih-strauss-cdc-fukuda-iom-the-cfs-report.29470/
     
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  5. Dolphin

    Dolphin Senior Member

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    Publicly-funded US research often has to be made available on PubMed Central 12 months after publication. PubMed Central often format papers in their own standard format which is different to how it was laid out in the original journal.
     
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  6. jimells

    jimells Senior Member

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    Yes, this is what goes through my mind when reading these criteria comparison studies. They tell us little about the way the criteria are actually applied in the field. Maybe they tell us what the best-case outcome would be in an ideal world.

    But in that ideal world, we would already have effective treatments, or at least be well on our way...
     
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  7. jimells

    jimells Senior Member

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    Now I understand. Thank you.
     
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  8. Chrisb

    Chrisb Senior Member

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    As a non scientist with a passing interest in philosophy, but a total inability to read it any longer, it always seems to me that there is a tendency to ask questions to which there is no answer. This question possibly conflates the "is" of identity, with the "is" of predication, with the "is" of existence. Until the question is posed correctly in a way that can be universally recognised and acknowledged confusion will reign.

    "Have you stopped beating your wife?" and suchlike.

    I shall have to dig out a book "The English Rock Garden" by Sampson Clay which contained the most useful critique of taxonomy I have encountered, dealing with the merits and demerits of lumping and splitting and how this was in no way a job for the scientist. Of course it may be that upon rereading it is nothing like I imagine it to be.
     

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